We are not very good at talking about death in the United States, but we are slowly getting better.
I have had families call me in a panic because their loved one’s “Do Not Resuscitate” form was changed to “Do Resuscitate” when the person went into the hospital or went into a nursing home. Often this is because of very little training in discussing end of life code status combined with fear and/or religious beliefs and/or confusion. I have checked with the nursing home and the rumor is that the patient is asked “Do you want to die?” when they are admitted and if they answer “No.” the code status is changed.
I use a POLST form to discuss end of life wishes and plans. Here: http://www.polst.org/. The conversation goes something like this:
“Mrs. Elder, you have transferred care to me. I see that you have had four heart attacks, three bypass operations and two cardiac arrests. You have a living will but I would like to discuss what your wishes would be if you got sick or live another five years and are over 100.”
“Talk louder. Are you really a doctor?” says Mrs. Elder.
“Living wills are written by attorneys. They say that if two doctors agree that you are terminal and might die within 6 months, don’t do too much. This has two problems. One is that doctors are not very good at predicting the 6 month thing and the other is that no one ever has explained what “don’t do too much” means.”
“Ok.” says Mrs. Elder. She bangs her walker on the floor. Her son rolls his eyes.
“The most common cause of death is the heart. If someone drops dead, two doctors will agree that they are dead, but what they really want to know is whether the person wants a natural death or wants to be resuscitated.”
“I don’t want to die yet.” says Mrs. Elder. “That new mailman is cute.” She cackles.
“This is a POLST form. It is to go with the living will. The first question is about a person who has no heart beat and is not breathing. They are dead. If your heart stopped, would you want a natural death or would you want us to try to revive you.”
“Bring me back if I’m gonna be ok.” says Mrs. Elder.
“We don’t know that. You don’t have a little pop up thing like the turkey that says “Too late.” If someone drops dead at 40 and we get them back quickly, they are fine. But at 95 if your heart stops, it’s like a stoke and you won’t be fine.”
“I don’t want a stroke. Also I don’t want to wake up with that scar on my chest again. It hurts.”
“Ok, so natural death.”
“Next are questions if you have a heart beat and are breathing, so not dead.” I am using the Washington State form:
Would you want a breathing machine if you were really sick?”
“No, I had that once.”
“Would you want to be moved to a bigger hospital if you had a heart attack?” We are rural and have a 25 bed hospital. “We can give you medicine but we are too small to have a heart surgeon and too small to have a cardiologist.”
“I don’t like that heart surgeon who did it last time. Stay here.”
“We gave you antibiotics last month. Would you want antibiotics if you were going to get better?”
“The next question is about feeding. If you were really sick and couldn’t eat, would you let us feed you through a tube?”
“I don’t know.”
“This question is really about comas. Most people are willing to be fed for a little while if they are going to get better, but not long term. Some people don’t want it at all. You are 96 pounds and if you got pneumonia, you might not get better if we didn’t feed you.”
“I want whiskey if I’m dying. A shot a day, that’s my secret.”
“We can request that.”
“No feeding. I’m ready.” She signs the form.
“I will photocopy and put it in your chart and send a copy to the hospital. You take the green copy home and put it on your fridge. Any questions?”
“What is the new mailman’s name?” She grins at her son, who is looking very relieved.
“Remember that we only use the form if we can’t talk to you or if you are too sick to answer questions or if you lose your memory. Otherwise you can change your mind.”
“Ok. Can we go now?”
“Yes. You are so healthy, Mrs. Elder, that I think we can go six months before I see you again. Ok?”
“Ha. I’m healthier than him,” she says, nodding at her son, “He doesn’t exercise. I walk out to the mailbox every day.”
I try to do POLST forms not just on my 95 year olds, but on everyone, especially everyone over 50. It does not cover every contingency, but it really does say to the family that the person has had a conversation and it gives better guidance than the living will. It was developed at OHSU, in Portland, Oregon, which is where I had my Family Practice residency. Hooray for OHSU! The last time I looked at the map: http://www.polst.org/programs-in-your-state/ it was in 8 states, but it’s busily spreading all over the United States. The POLST form is designed to be redone every few years as people’s health status changes.
Take the burden off your family and do your POLST form.